Mother’s Day: Being a Member of the Special Mothers Club

How I Became a Member of the Special Mothers’ Club

I joined this club almost 36 years ago when our daughter Samantha was born with Down Syndrome. When she was born, we didn’t know she had Down Syndrome. The doctor came to my room in the middle of the night and matter-of-factly announced his suspicions. ( I think doctors need to show a little empathy when being the bearer of bad news.) Tears were shed in the quietness of my hospital room, with little Samantha nestled in my arms. From that moment on, she has always been at my side, and I have been her voice and advocate.

My world was quickly filled with therapy classes and social workers. Sammy began group therapy at 3 months old and went to a wonderful all-Down Syndrome preschool class until she was 7.

I even started the first inclusive program in Basking Ridge, New Jersey, when we were preparing Sammy to enter kindergarten. I was supported by the principal, the teachers, and the caseworkers involved in educating Sammy. I felt she could handle being in a ‘normal class” in elementary school, but she showed signs of stress by 4th grade. We moved her into a self-contained class environment all the way through high school, but she continued to go to “normal classes” that we felt she would understand and be an active participant in the class.

She had a wonderful time in high school. She was even in a school production of The Wizard of Oz as a Munchkin because her speech coach was the director. She was the biggest cheerleader for her brothers and sister at their sporting events, and she was embraced by the team and the parents. Life was easy for her.

I was her advocate and her voice throughout her education, but many of you will wonder what will happen to your child after they turn 21 and are no longer being educated or attending a program on a daily basis.

Life for Sammy As An Adult

Being a mother to a special needs adult is different than who I am to my other 3 adult children. I am Sammy’s lifeline, her driver, her social calendar administrator, and her caregiver.

You will have to make many decisions for your special needs adult because what they do will affect you, too.

Will your child work, attend adult day programs, or do nothing? Government help is slow or nonexistent if you don’t know how to ask the right questions or do research on your child’s benefits after they turn 21.

Consider Your Adult Child’s Future Needs – Depending on the nature of your child’s disability, he or she may require assistance managing financial matters or daily activities. Once your child turns 18, you no longer have the legal right to make these decisions for your child. Instead, you should consider a legal guardianship, Power of Attorney, or another plan to protect your child with special needs. Learn more.

Sammy’s Careers

Hyatt Place

We are lucky that Samantha has wanted to work since she turned 21, and we have found employers who want her to work for them. Sammy is fortunate that she can work and earn a living. She loved working for the Hyatt Place Cobb Galleria as a server in the kitchen, then in the afternoon, she helped out in the laundry room. She was adored by her boss and fellow workers. She was the first disabled adult hired by Hyatt Place at the Cobb Galleria, and she won rave reviews from the guests and her boss.

I drove Sammy to and from work, so I scheduled my interior design client meetings around her pick-up time.

Working at the Atlanta Country Club

After COVID, Sammy was working at our country club in the tennis and fitness center. The tennis ladies and staff were so kind to her and gave her gifts for her birthday and Christmas. Sammy was the first employee at the club with a disability.

Lucky Ones Coffee Shop

When we decided to live half the time in Park City, we were fortunate to have two coffee shops that hired people with disabilities. Both Lucky Ones Coffee were started by Taylor Matkins and Katie Holyfield.  Both have worked in adaptive recreation and saw the need for more job opportunities for individuals with disabilities.

Sammy works eight-hour shifts because she loves her job and can handle long hours at work. She would prefer to live all year long in Park City because of Lucky Ones Coffee. Working is so important for our special needs community, and we’re so blessed that Sammy has an opportunity to be a relevant part of the workforce in Park City and Atlanta.

At Home with Sammy

Sammy is a young woman who is still very childlike. She loves birthday celebrations, still believes in Santa, hunts for Easter eggs, loves singing along ( and making up the words if she doesn’t know the lyrics)to Michael Jackson or Taylor Swift and still dress up for Halloween.

We have decided that Samantha will always live with us. At this time, she will not live in a group home or any other form of independent living. However, that can change over time if we are unable to care for her, as she loves living with us.

We have other living options that some families will choose for their special needs children, like adult group homes, apartments with supervision, and so on. It’s a personal choice, and we prefer that Sammy live with us.

She is a great helper in our home. Sammy helps me cook, clean, and do the laundry. Sammy is my little “Minnie Me.”

Sammy learned to ski in 2022 in Park City through the National Ability Center. They empower individuals with disabilities through the transformative power of ADAPTIVE recreation and ADVENTURE.

Because of her “young at heart” disposition, my family embraces the childlike qualities in her. We do more fun family things like our annual Gingerbread House competition after Thanksgiving. It is hilarious, and we are so competitive, but you wouldn’t know it.

Sammy loves coloring and doing crafts with her little nieces.

Or swinging alongside the girls.

Sammy is My Travel Buddy

For the last three years, Sammy has been my travel buddy for paid collaborations with hotels and tourism boards when my husband hasn’t been able to join me. Sammy joined me in Macon, Georgia, when I was invited by the Marriott to stay at Hotel Forty-Five.

This June, Sammy will be going with me to Williamsburg, which I will share with you later. The Williamsburg Tourism Board invited me, and I needed Sammy to be my sidekick and photographer. Stay Tune!

Sammy has been featured in Collaborations with Brands that I work with

I have worked with Alivia on a couple of projects because they work with disabled adults as employees and artists. Alivia is a forward-thinking company that creates fashion from the art of people with disabilities.

This was my first collaboration with Alivia.

Alivia Dresses For Sammy And Me

Always the Bridesmaid

We are blessed with an extended family of cousins who always embraced Sammy as a peer, not someone different from them. Sammy has been a bridesmaid at our son’s wedding and the weddings of three of her cousins. She loves being a part of a wedding!

Cooking with Sammy Videos

During the COVID-19 lockdown, Sammy and I created cooking videos just for fun. Many videos focus on young children with Down Syndrome, and I thought it would be nice to share an adult with Down Syndrome cooking in the kitchen.

Sammy’s Social Life

Sammy has a very active social life. She goes out on the weekends with other special needs adults on chaperoned trips for dinners, plays, and sporting events. Sammy even goes on annual beach vacations, appears in fashion shows, and goes to spring formals, movies, and plays.

Sammy is surrounded by her siblings, her nieces, caring adults, and friends, so her life is full of people. I don’t think she is lonely even though she doesn’t date, but that may happen someday, and we’ll have to deal with having relationships as special needs adults. Some of her friends have boyfriends, but Sammy isn’t sad about not having a boyfriend. Prince Charming just hasn’t come into her life yet.

Having Sammy in our lives has been so rewarding and filled with so much love, but it’s been work. I kid you not. Being in the Special Moms Club involves daily caregiving, scheduling, and advocating for her, but I wouldn’t change one minute of my life to have it any other way. I bet lots of the club members would agree with me. It’s all about motherly love.

Life after 21 can be rewarding and fulfilling for your special needs child, but you, as a Special Mom, will continue to care for and nurture your child to be the best they can be.

So here’s my blessing to all the Special Moms who are in this club on Mother’s Day: “May you find joy, love, and acceptance in this journey with your child, and remember you never walk alone. This club is never closed.”

When Sammy was born, I loved this poem, and I want to share it with you today.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure, and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow, I visualize God hovering over Earth.
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
“Armstrong, Beth, son. Patron Saint, Matthew.”
“Forrest, Marjorie, daughter. Patron Saint, Cecilia.”
“Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles. “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who knows no laughter?
That would be cruel.”
“But does she have the patience?” asks the angel.
“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she’ll handle it.”
“I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I’m going to give her has a world of its own.
She has to make it live in her world, and that’s not going to be easy.”
“But Lord, I don’t think she even believes in you.”
God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”
The angel gasps, “Selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn’t know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see–ignorance, cruelty,
prejudice–and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side.”
“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.
“A mirror will suffice.”

Do you know a member of the Special Moms Club? I would love to hear their story, too.

Thanks for stopping by!
I would love to hear from you!

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